My advice to you which helped me is to find a support group where you can get and give support for free, pray every single day and tell God what you are having problems dealing with and ask for his help and will, and try to live in the moment instead of in the past or worrying about the future. It’s ok to be where you are in your process. Recognize and embrace it. Best wishes.
Its a really good plan, so glad you are doing a little better.
i found myself in the same situation , sounds like my life , i really think the start of my downfall was menopause at age 50, I had no idea what was happening to me why i started crying sometimes it seemed for no reason, i had to deal with people at work all day and i started feeling like i couldnt do it anymore. I talked to my doctor who put me on a medical leave from work for depression and during my time off my boss fired me because she said she needed someone there and couldnt wait for me to come back. Anyway i dont think the meds really helped they just numbed all feelings i had. I personally believe now (years later ) that it was the onset of menopause. Also , the stress likely had finally taken its toll.
@linonline25 - I can’t believe they got away with firing you while on leave! I’m in the middle of it and was experiencing some depression and an energy counselor recommended black cohosh and folate acid. I thought I’d put it out there if you are still in need but it sounds like that was a while ago.
yes it was 3 years ago , but thank you
-It is wonderful that you are reaching out when feeling stressed.
That’s what we’re here for!
-It is heart-breaking to not be able to help/fix our sick sons.
All our emotions are amplified at this time of year.
-Try to take good care of yourself. Little things can really help.
Try to keep your perspective. And set boundaries.
I often say to myself, “I’ve done all I can today.” and let it all go.
especially after a visit. They can only be the person we hope them to be
for a very short time. Their disease is devastating to cope with!
We and even the medical professionals and mental health staff,
can’t help them as much as we hope.
Try to have a normal life.
And pray a lot.
Yeah, I get plenty of those days but am learning to handle them.
Sometimes, I get strength from prayers, and guidance from people around me.
Best of all, every now and then, I get a cake or a drink from my daughter that reminded me there is much to love and we should slow down and enjoy those moment.
I wish you all a joyful Christmas and a happy New Year coming ahead.
At my house my husband and I are letting everyone know we simply cannot do the Christmas present thing this year.
It is our first Christmas after our son’s break, and I have been cooking, researching about his illness. We are in the midst of downsizing and putting in a new septic before we sell this large home. We both work - it is just too much and our youngest is 22.
My son who was diagnosed this summer has suddenly taken a down turn. As if a switch turned on and he is suddenly very delusional about sexual abuse by almost everyone we know.
Take care of yourself. Consider an overnight in an airB&B in the woods. Doesn’t that sound wonderful?! Just thinking about that possibility helps me to CALM.
Practicing “Here and now” meditations while I’m walking or sitting - what do I hear, smell, feel in my body right now. Feel the wind and my feet under hitting the pavement as i walk. Breath in deeply then out in a looooonnngg ribbon of sound - ohhhhhh. Here and now is the antidote I use to get out of the worry and stress.
Best wishes to your family.
About the first year after my son was diagnosed and when he still talked he asked me how I was doing. I said “in this moment I am wonderful”. He gave me the biggest hug and really appreciated it. Today, he still allows me and his dad to hug him. It would be sad if we could not and I do understand that this might change but for now in this moment this is wonderful and I am grateful. Thanks for sharing.
Hi, I have had a very emotional day today, feeling heartbroken over my son s sz. It is 2 !/2 years into it and I have days where I feel so hopeless and cry off and on all day. I am so sad that he is so socially isolated and he counts on me so much. I am thankful I can be there for him, but It can take over your life. I really get comfort reading all the posts and hope all of us have a glimmer of hope and joy tomorrow, any smile or hug from our sz children is wonderful. So glad I found this site for the compassion to help cope.
@Mom2 Does your son not talk? I’m wondering if this is the path I’m heading down with my son. He doesn’t talk because I don’t see him even though he lives with us. But I’m wondering if he is alone so much he may just stop talking.
Presence - Thanks for the helpful suggestions! I will give them a try. I am sorry to hear about your son. This is such a difficult thing to go through; obviously for the person who has it foremost, but the family is also suffering almost as much. It is so difficult to adjust to this new person that your child has become and realize the “old” child will probably never been seen again. My son has had this since about age 7 1/2 and is 17 now, so I feel like an old pro at this (LOL). Hence, I can usually handle everything in my stride and when I started not handling, it was startling. I am menopausal, so maybe my hormones are off kilter. Who knows?! Thanks again for your kind words. Wishing you and your family a lovely, peaceful, joyous holiday season.
Your note hits the very core of the experience. Makes me weep and I appreciate the stark acceptance and wisdom of it. Very best wishes.
I make it a point to take him around people who love him. I even took him to a community holiday event. I don’t think he spoke to anyone but I’m glad he went along. It was outside and it was dark and lots of space so pretty perfect. He used to enjoy it and it was a good call to take him.
I made it a point to tell him, we will go see the lights and you tell me when you want to go. I try not to add any pressure. Just ride along kind of thing. He hasn’t talked much for about a week but Sunday managed on word answers.
It’s been about the same all week. You know how it is every day is different.
Hi Diane and Mom. Last winter, after experiencing his second major break and then remaining very psychotic (refusing meds) for a number of months, my son could barely string 2 words together. He was so ill.
Once he was medicated (involuntarily), his expressive language skills went back to normal (his normal). He later stopped meds again and was again hospitalized, but his language skills didn’t get nearly as bad as they were before. Maybe it was because he just hadn’t reached the same deep level of psychosis as the previous time?
My son has been on Invega Sustenna for 3 months now and his expressive language skills are better than they’ve been in years.
Hi Irene. My son has no friends and very limited family, and he constantly relies on me for companionship. He has no motivation or aspirations. He just follows me around the house or begs me to just sit with him while he plays video games. He’s so lonely and so paranoid something bad will happen to me.
Sometimes I get so angry and I just can’t stand being with him because I feel so trapped, and sometimes I just feel so sorry for him because it’s the illness that put him in this situation. No 21 year old man would choose to spend all his time with his mother.
Some of us on this forum don’t get to be with their ill children at all, for a variety of very sad reasons, so I have to try to appreciate what I have and be thankful for the progress my son has made. I can do this. I have to.
You’re not alone.
Hi Day to Day, Thanks for your reply, It came after a very long trying day with my son. He was so anxious today and hearing voices, seeing him suffer so much is beyond horrible. My son is 22 and also has no friends, and very limited family support, I am his primary caregiver, chauffeur, best friend, and therapist, cook etc, etc. I have a significant other who helps me out financially, but offers no emotional support and doesn’t even believe sz is a real illness. I think you really don’t get it unless you have been thru it. I am lucky enough to have a sweet daughter who is busy, but is supportive for me, but I don t want her life taken over with this disease like mine is. My son used to talk to her, but now doesn’t want anything to do with her, this came out of the blue. Anyways , nice to know I am not alone and knowing others are finding ways to cope and sharing them. Hope tomorrow is a good day for our sons.
@Day-by-Day Thanks for the info. I did get a few words out of my son the other day so I’m glad to know he still has a voice.
Show him this video of my wife LOL:
Look at all the things you are doing and all you are carrying on your shoulders. No wonder you’re overwhelmed! I’d be worried if you weren’t. Our reactions and emotions aren’t static; some days things that never upset you will and some days everything will. I think of these moments as times of my life when all my emotions are right at the surface. A little scratch and out they come and in ways I sometimes don’t recognize as being part of me. I let myself feel them and tell myself it is reasonable and understandable to feel this way. Then I remind myself that my mind is tired and it’s not going to be like it usually is because it’s not able to be at the moment.